Loretta & John's Story

“I have the confidence to pick up the phone if I need them; it’s a real support to know we can ring at any time. I did at one point think I might have to call the nurses, and although I didn’t in the end, just knowing they were available made me feel I wasn’t completely on my own any more.”

John Ramswell has idiopathic pulmonary fibrosis, a condition in which the lungs become scarred and breathing becomes increasingly difficult. He and his wife, Loretta live in Harpenden and are using several of the services offered by Rennie Grove Hospice Care, including 24/7 responsive hospice at home care, Day Hospice sessions and its carers’ support group.

The couple also know they can be referred to the charity’s occupational team if John’s condition deteriorates and he needs specialist equipment, and Loretta feels reassured that she can request respite visits at any time, where a healthcare assistant will come and sit with John, allowing her to go out to the shops or to an appointment knowing he is in safe hands. Loretta explains what this support system means to them both.

“I had been feeling a little bit on my own. Although I had spoken to my vicar about John’s condition and how I was feeling, I didn’t really feel able to go into detail about it until we were referred to Rennie Grove Hospice Care.

“I’ve been very surprised at how quickly everything has fallen into place and already I feel so much more able to cope. I’ve attended the carer group at Grove House and I surprised myself at the ease with which I settled in. I don’t always find that sort of thing very easy but I was made to feel so welcome. Listening to others talk about their challenges made me feel less alone. At least I knew what I was dealing with, which wasn’t the case for some people.

“I was really impressed with the leaders of the group too. They arranged it so that I could be with John while he was being assessed for Day Hospice but also spend some time on my own with other carers.

“To be honest I was really expecting John to say ‘I’m not going back there’ but he’s very willing to go back and he obviously felt very comfortable and at his ease on his first visit.

“John’s memory isn’t great so I do need to attend some appointments with him. I’d been worrying about how I would know what was happening at Day Hospice but within fewer than 24 hours of me broaching this with someone from the charity, John came home from Day Hospice clutching a notebook in which was written ‘Hi Loretta. This is just to keep you in the picture and to help John’s memory.’ I couldn’t believe they had addressed my concern so quickly. The teams work marvellously together – the liaison is so good. I can’t express that enough. I just feel like I don’t need to worry in the way I used to.

“I feel more in control in so many ways: I have information available about where to go for practical help, like a blue badge or carer’s allowance should I need it; John has specialists all working together to improve his quality of life and I know I can contact them at any time of the day or night.

“John’s is quite a complex case and we’re dealing with three or four conditions really. He’s also been assessed for Hospice at Home care, which means we have access to Rennie Grove’s specialist nurses round-the-clock.

“I have the confidence to pick up the phone if I need them; it’s a real support to know we can ring at any time. I did at one point think I might have to call the nurses, and although I didn’t in the end, just knowing they were available made me feel I wasn’t completely on my own any more.

“The team at Rennie Grove are the most important people to me right now – they’re the only ones who know everything about our true situation.”